Is it time for a nap yet?

in 2019 the FDA approved a drug called trikafta (which is really three drugs in one) for cystic fibrosis treatment. what it essentially does is patch up the malfunctioning proteins that cause the extra sticky mucus. trikafta is effective on about 90% of cystic fibrosis patients.

people who had spent their entire lives in and out of hospitals, on and off of ventilators, suffering from pneumonia and sometimes treated through painful procedures like intubation took this drug, got out of bed, coughed up an entire lifetimes worth of mucus out of their lungs over the course of a few hours, breathed clearly for perhaps the first time in their lives, and now go on to live well into their seventies.

My ward is the respiratory ward - CF is one of the things we specialize in.

Since this med came out we haven't had a SINGLE CF admission to the ward

There used to always be a CF patient spending a couple of months with us at a time

There's a man who is 23 years old who I was sure would not survive his next admission (aim saturations 85% is end stage lung disease)

There's a set of the local frequent flyers that we all know so well

Except

No we don't

On the CF specialist ward (with reasonable staff turnover)

Half the staff have probably never even seen a CF patient

Additionally, it should be noted that metrics like life expectancy are in no way a guarantee of... Anything. There are significant outlier CF patients who are at an advanced age now despite the odds due to a variety of different factors, having lived the majority of their lives before the development of modulators.

That is per month with the most common coupon people are likely to use.

But don't worry, there's grants and patient assistance programs you can apply for. 🤞🫠 Most people in high income countries like the USA can get it "covered" through insurance for fewer thousands of dollars. Or even less if your insurance is good or the manufacturer likes how poor and/or on Medicaid you are! A good social worker will help you with the process, and make sure your yearly reapplications and PAs are done a little early so they have time to think about it before you run out. Jesus Christ.

Canada

Northern Cree, Whitefish Jrs, Red Bull, Young Spirit, Seekaskotch, Little Island Cree, Big River Cree, Iron Swing, Cree Confederation, Poundmaker, Little Axe, Moccasin Flat, Mosquito, Mountain Soul, Northern Wind, Blackfoot Confederacy, Eya-Hey Nakoda, Bear Creek, Rock Hill, Cree Society, Stoney Park, Black Bear, Eastern Eagle Singers

USA

The Boyz, Midnite Express, Southern Cree, Cozad, Bad Nation, Wild Band of Comanches, Iron Wood, Kicking Woman, Mandaree, Black Lodge, Omaha White Tail, Tha Tribe, Black Thunder Singers, Stoney Creek, Black Eagle, Meskwaki Nation, Youngbird, Elk Soldier, Southern Outlaws, Whitefish Bay Singers, Thunder Hill, Toka Nuwan, Smokeytown, Indian Hill, Whitetail Boyz, Young Grey Horse, Black Otter

Misc. (I don't know where the singers formed the group and/or are primarily from, or the group has singers from multiple places)

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TRAP CARD ACTIVATED

No, but seriously, anon, you need to look into what's going on in his classroom because he's probably being taught this trash method instead of phonics. He does not know how to slow down and sound things out because his school has never taught him that. When you tell him to do this, he has no context for what you're even talking about.

This has come up repeatedly here, and I don't have time to froth at the mouth today, but look up "whole language".

This podcast made waves a few years ago when all the lockdown parents discovered, to their horror, that their kiddos weren't being taught to read in the NORMAL FUCKING WAY WE'VE USED FOR LITERALLY CENTURIES and were instead being taught a fake-ass method backed by vibes and antivax-levels of pseudoscience.

But of course it feels intuitively sensible to her. She taught herself to read at age 2. That's the exact kind of experience that does make this method sound reasonable. But like you say, if it's going to happen, it happens very early and without the school curriculum.

As for me, I've said it before, but I assume anon wasn't around: I could not learn to read.

I was in second grade. (First grade? I can't remember. Around then.) Most of my classmates were reading at least a little. Me: nothing. I could not learn.

It was even a god damn private school, but I had to have a fucking tutor. I got dragged over to that lady's office a few days a week for... two months? Four months? It really wasn't that long, as far as I know. I was more than ready to learn. I just needed an actual fucking method that wasn't lying trash. Almost at once I jumped from nothing to reading well above grade level. For the rest of my childhood, I continued to diverge from my classmates in how many words I knew, how well I could read, the works. Every year of grade school makes that gap widen. I was on the desirable side of that gap. I was lucky.

It's obvious how verbal I am from reading my tl;dr on this blog.

But I could not learn to read.

Smoking is a vice. Vices can be managed, cut back and replaced.

If anyone tells you go cold turkey on most drugs in a high stress period of your life if they are not causing insane self harm or harm to others, they are like a puritan and a cop who is going to inadvertently hospitalize you or give you a stress attack. Quitting cigarettes cold turkey while braving exterior stress can make your health worse should you relapse.

Consider counting cigarette intake down before quitting entirely. So you don't have intense panic attacks.

You often need to be stable to quit. It is okay when you aren't.

and he'd be like, "between the two of us?" as if the answer was obviously him

and we're standing there like this

Steve Rogers & Bucky Barnes MARVELous: A Risqué Parody